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The woman who woke up thinking she was French
Last updated at 23:37pm on 12.12.06
Louise Clarke is only one of 200 people in the world to develop Susac's Syndrome
She lives in Bristol and works in Bath. But Louise Clarke became convinced she was French.
A rare brain disorder left the 30-year-old recruitment consultant believing she was living in Paris.
She started speaking French all the time, rang her friends to invite them to stay in the French capital - and asked to eat croissants.
She was also plagued by migraines and hallucinations and ended up so confused that her worried family took her to hospital.
After months of tests, she became one of only 200 people in the world to be diagnosed with Susac's Syndrome.
The disorder is thought to be brought on by stress and affects the brain, ears and eyes, mainly among young women. In Miss Clarke's case, it appears to have brought back memories from when she was living in France four years ago and confused them with the present.
"It might sound funny to others, but suddenly thinking you are French is terrifying," she said.
In October 2004, she began to become confused, disorientated and suffered cloudy vision. "It started with migraines and hallucinations," she said. "I eventually got so confused that my sister took me to A&E.
"I was gabbling away in French in my hospital bed. It was a really tough time for my family.
"At one point, my sister discovered I had phoned all my friends and told them to come and visit me in Paris. She had to ring them all back to explain what had happened." Miss Clarke also thought she was in Vietnam, a country she had visited a few months before she became ill.
She spent three months at the Royal United Hospital in Bath while doctors carried out test after test. She was eventually diagnosed with Susac's syndrome. It is thought to be an autoimmune condition, which means the symptoms result from the immune system attacking healthy tissue.
Typically, it causes alterations in the brain, leading to memory problems, behaviour changes and an inability to concentrate.
As Miss Clarke's case shows, it can also make the sufferer think they are living in a memory of something they experienced months or years earlier.
Miss Clarke, who still has the syndrome, is able to control it with steroids and other medication but has been told it can last up to five years.
Professor Michael Hahn, an American expert who has investigated the syndrome, said Miss Clarke was not alone in suffering such bizarre symptoms.
"I've studied around 40 cases and a fair percentage reported the confusion of believing they were in a foreign country or place they had visited," he said.
•Susac's Syndrome is named after Dr John Susac, who first spotted the problem in 1975. Sufferers often experience a personality change and develop bizarre and paranoid behaviour. Their speech can be affected, and many experience unrelenting and intense headaches and migraines, some form of hearing loss, and impaired vision. The problem usually corrects itself, but this can take up to five years.
Reader views (13)
My wife Karen, has been diagnosed with Susac's, and is now undergoing treatment with steroids ( prednisone ). She is 51. I believe she has had this disorder for awhile (maybe 3 years), and it only started to flourish in her brain this summer. She has gone through a pretty dramatic personality change in the last three years, suffered from migraines, and finally in June, started having bouts with vertigo and falling, hearing loss, memory loss, facial numbness, seeing "lights", all the classic symptoms. She was rendered nearly helpless by this demon about 6 weeks ago on Labor Day weekend. We got her to the hospital on Sept 9th and it took our medical team led by an Indpls neurologist, Dr David Josephson, about two weeks to confirm Susac's was it. I am hoping that she'll at least be able to make a complete physical recovery, and return to her job and the new life she had started to live without me. Our marriage looks to be a casualty of the personality change.
- Fred Yde, Carmel Indiana
I had a hearing loss on May 31st 2009. Brain MR showed encephalopathy and I went to hospital. I was told there about Susac's syndrome. Then I walk with vertigo and cannot drive at all. Sometimes I needed somewhere to hold to walk. Walking is better now.
- George Makris, Athens Greece
My mother was diagnosed with Susac's disease 6 years ago and she has never been fully treated for the disease. She has mainly been treated for the separate issues such as acute/full hearing loss, cataracts, bleeding of the iris, tinnitus and resulting depression.
If anyone knows of a specialist in Australia to discuss this with further, I would really appreciate your assistance.
Regards
- Karli Slavik, Australia, Sydney
Hi, my daughter (now 27)was diagnosed with Susac's three and a half year ago.
Along with migraines, hearing loss and eye problems none of that compares to the emotional and psychological traumas she has gone through.
She has been through physchological tests and they say she is emotionally at the 5th grade level. The memory loss, dementia and confusion is so hard to manage.
Mayo Clinic in Rochester MN is doing a research study on the syndrome.
My daughter was lucky enough to be included in this but even with the best medical care in the world they can't guarantee full recovery.
Her physiological therapists and occupational therapist are the best, they have been counselling her for a year now but she still has a long way to go. She had a relapse 2 1/2 years after being diagnosed initially. She has been on the same regimine, steroids, aspirin, ibuprofen, IVIG and now since her relapse she is on cellcept for another year.
There is a Partnership Class available at the Mayo Clinic free of charge to the parents or caretakers of patients with brain changes or damage to learn more about how the brain works and what happens to patients when they have these emotionally challenging diseases.
There will specialists there to answer questions and help caretakers to come up with ways in which to deal with behaviours.
I should mention that we waited to give her the cochlear implants and her hearing came back fully, unlike a few other patients we know of.
- Marie Rivard, Mpls MN USA
A friend of mine also has this syndrome. It was only very recently diagnosed, but it was such a relief when it was. Friends and family were all very confused and couldn't understand what was happening to him. I will withhold his name as he finds it quite embarrassing, but we are now able to understand what he is going through. In fact, we are going through it with him, and it has bought us closer together. We look forward to the day when he can regain some sense of normality, but until then, we will be there for him. I like to look on the bright side, and see it as a good opportunity to practise my French.
- Janet Thissoulis, Faliraki, Rhodes
My mum was diagnosed with this disease when I was 2 or 3 years old. If anybody knows how to get in touch with this Dr. John Susac please tell me, nobody will ever answer any of my questions and I would really like to know about this, she's my mum and I don't have any clue what's wrong with her.
- Daria Dibono, Carmel, NY
My best friend has been diagnosed with Susac's. At UCI hospital she was given IV Steroids. After a few she seamed a little better. Now it seems after no steroid treatment for a week the symptoms are returning rapidly. We are desperate to find some help for her.
- Sandra, Garden Grove, CA; USA
Our 18 year old daughter was recently diagnosed with Susac Syndrome. I feel like I have been in a fog since this whole thing started. Now we are preparing for treatments and I am terrified! I hope we are doing the best for her. What kind of support is out there for this? I got to speak to Dr. Susac and I heard all the clinical things now I would like to hear from the families and patients themselves. What kind of life do you have after treatments? How do you cope with all this? How is life like living with Susac Syndrome? I feel so scared...
- Lisa, Palmdale, CA USA
My 19 year old niece has just been diagnosed with Susac's and is in the acute stage with IVIG infusions and high steroid doses. If there is any kind of support group for families of these patients, please notify me. My family is terrified.
- Karen, Naples FL USA
Quel dommage! Bon sante, madame.
French is a beautiful language, that is why I studied it in school. I hope the US and France can once again become close friends. . .it could happen. And, as I say above I hope your wife has her health return.
Chris
- Chris, Valley Village, CA; USA
Terror at feeling one is French doesn't strike me as a malady. She sounds perfectly normal in that respect.
- Alan, New York, USA
Really interesting!
Recently, november 2006, my wife, who's French, had an ischemic brain stroke. When she woke up she started to speak English and beleived she was still in Canada (We lived there 15 years ago)... nothing to do with the Susac's Syndrome. She is recovering quite well but still use some English words when she doesn't succeed to find the French ones.
- Jpll, France
Poor thing!
- Jay, London
